I have been having some very difficult inner dialogue these days about what matters and what is worth all the difficulty and effort.

Perhaps it is coming from a difficult place this year, with pain and frustration, but perhaps it is also a common place for many other chronically ill sufferers too? Everything feels very difficult and challenging. Existence is extremely hard. Peace and fulfillment can often feel beyond reach.

Recently I spoke to a close friend and fellow sufferer (online) about how I was thinking and feeling, and about where I am emotionally and mentally in my struggles. It was quite a difficult and emotional topic to admit to and talk about.

I spoke about the things I had been trying to do and achieve to help feel useful and also to stay focused on in this life. I discussed the charity (super spoonies) and my blog (Autoimmunitygirl) and I expressed that I have very grave doubts whether they have, in fact, been useful.

Since starting the charity and putting energy, money and efforts into establishing, promoting and developing merchandise etc it has failed to raise any support or money to donate to research. Not even enough to cover its promotional costs. I felt devastated. The reality of it all felt crushing.

All the work and all the effort wasted…

I then started to question my little blog and whether it really does help others, and if it has helped other sufferers unite and feel connected. But now I am asking myself whether my blog really matters either?

I hoped that by writing openly and earnestly about some of these very personal experiences and challenges that have happened to me in the past decades that it would help to educate and engage others who don’t have a chronic illness or don’t know anything about autoimmune diseases. I also hoped it would bring sufferers closer together and help restore a little respect for ourselves and our daily struggles.

The Facebook support groups (chronic groups and ‘Laughter is the best medicine’) that I planned and helped put together I have now had to abandon due to declining health. Has it helped? Does any of it matter?

I questioned that if my own friends and loved ones don’t feel more aware or closer by my efforts, posts and honesty than why should anyone else feel any benefit or help from my writing and advocacy? Most friends and loved ones are either indifferent or seem inconvenienced by what I write. Therefore has it helped bridge the gaps and reconnected us? I don’t believe so.

There was nothing that either my chronic friend or I could say to each other at this point. It felt heavy. Like only the weight of hopelessness can feel.

It is hard enough feeling that as a chronic fighter you have to constantly fight for a purpose or worth in this world without feeling that your advocacy is meaningless too.

Is this a crisis of confidence or is it yet another stage in chronic life? One of declining hope and meaning? I don’t know yet.

I am at a crossroads now, do I continue my advocacy or do I abandon my efforts and simply live out my days quietly and without troubling the world with these topics, causes and realities?

Out of sight and out of mind…

On one hand it would save me a lot of effort, emotions and energy. I could just use all the time and money I have left on my own happiness. It would also allow those I know to stop having to hear or see the pain and difficulties faced by people like me. I could just disappear completely… It’s very inviting.

I have seen many times in life that there is little reward in taking on the role of a martyr or putting yourself out there for judgement or ridicule. Compassion and philanthropy does have a very real price for those with big hearts and kind spirits. Nothing comes easy and often it is the most giving that are the least appreciated. Altruism requires a very special nature that very few possess or show. It appears to be shown less and less in this world, although the world seems to be in more and more need of it as I look around me.

The only reward I hoped for when I went into all this was only to make a difference. I didn’t want celebrity. I didn’t want any other kind of recognition. But I did want results. I wanted to feel like it mattered and something useful had been achieved.

And that is where I am…

I have been asking myself for months now does it really matter? It is probably the hardest thing to face since I first started losing my health!

Gentle hugs,

Trish